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On And Off. Living With Parkinson’s.

On and Off. Living with Parkinson’s.

For me L-Dopa is what keeps P sedated.

P is of course Parkinson’s and when I don’t have L-dopa (I have no Dopemine production), P can take control. When I have L-dopa, P can be contained. Being off is when we do not have L-Dopa/dopamine (“wearing off” is the often used to refer to this problem)

P is not me ofcourse, but he can take over your life if you let him. The truth is that Parkinson does not destroy our ability to have a good quality of life. We are not victims, as a victim does not have a choice. We can decide to adapt our life style and live well but the sad fact is that many of us do not understand that we we do have a choice and many fall into depression and Apathy. We all have a degenerative condition called ageing, yet most people of 70 years do not blame their age for their lesser ability to do things. When we have Parkinson’s this acceptance and adapting to the reality is harder as we are less prepared, Parkinson’s was never part of our future plans and it’s arrival puts everything on hold which often makes us feel depressed and unsure, but never the less we must adapt and like old age, accept that change. That does not mean we will  lose our quality of life, but it does mean that we must re-evaluate and restructure our life and plans. Going on and off makes this harder as when we go off, it is easy to fall into the Apathy trap. Parkinson’s does not change who you are but may often change your perception of who you are. In truth this perception can be distorted as others still see the same person. We may lose confidence and focus and start to feel different, especially if we have wearing off (when we change from being on and being off).

I was diagnosed at 46 years of age (9 years ago) and despite the many Neurologists who insist that it does not matter when you take L-dopa. I think that the fact I was put almost immediately onto L-Dopa was a mistake. Can you go on and off if you are not taking L-dopa… Well no… Therefore it depends on the strength of P and the amount of L-dopa to define what on and off actually means.

I also think that it is very hard to reduce L-dopa dosage once you are taking it say 4 times per day. So on and off is almost inevitable as P gets stronger.

I find Neurologists have little understanding of what off is…this is to be expected. As one Neurologist said to me recently “I know a lot about Parkinson’s but I don’t know P as I have never met him”. Not having Parkinson’s is a definite drawback for a Neurologist! I have found over the years that Neurologists sometimes start from the wrong end of the stick. We see them for perhaps 20 minutes per year and they then prescribe the time and amount of medicine based on few facts. P is far more complicated than this, and the fact that most neurologists do not experience wearing off ,means they often underestimate the problem of being off or look at it as a physical problem. It is much more than that as it effects mood, thinking and many non motor systems which are often dismissed by Neurologists. Being quite young and still working means that going off stops my working and the tendency of some younger people with P is to anticipate their next dose, this is a fatal flaw and as mentioned, it is difficult to reduce intake so it is easy to fall into the pill popping trap resulting in high dosages after just a few years. And high dosage means that when you go off. You go off from a great height (dosage) which makes it even worse.

P and I have reached an understanding. I now zap my brain with DBS (deep Brain Stimulation) and he contains himself a bit better! DBS does help in reducing this on off cycle and reducing the amount of L-dopa we take.

It is true to say that going off can happen quite fast, I have found that getting back on is sometimes more than a simple next dose. I can stay off for hours. Amusingly, I know when I am going off as I get a great pain in my left foot (dystonia), not so amusing is that when the pain starts it is usually too late to stop the process.

What helps ME when I go off? Everybody is different, my off effects my movement but does not block me. Walking slowly (and badly) when trying to get back on does appear to help. This may be because it increases my heart beat and therefore gets the L-Dopa pumping to the brain more effectively. My off is also cognitive. My thinking is not clear and I have a feeling of  negativity which I can only surpass by actively forcing myself to be positive and even try and stimulate my brain. In the same as walking helps, this does appear to help me back into the world off positivity and return back on.

It is a mystery to me and a little weird that in the country where I live (Italy). People with P often go into hospital to get there meds “reset”. I find this both amusing and wrong. Two reasons…1. I hate hospitals, being separated from my family and being with people much worse than me and indeed treated as if I was a victim. 2. Strange but I do NOT live in a hospital were my every whim is catered for. I live a busy life so what works in Hospital invariably does not work when I get home.

I believe strongly that P should be visited where he reeks the most havoc. At home, at work, in the community. We should be better educated about medicines, ask questions and keep dosage to the lowest possible level such that P does not cause major problems. L-Dopa is still the front line medicine after some 55 years since it was first introduced (no comment!) but it is  a drug and should be treated with care and attention.

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